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Hugo’s Lip and Tongue Tie Journey

This post was written by Amber about her little man Hugo. The feature image is of Flynn because we too are now facing the same sorts of things that Amber faced with Hugo. We just want our kids to be healthy and feed well so we too are now looking forward to to having his mouth fixed up so he can feed with greater ease.

If you have been following me on Instagram for while now, you will know that my son Hugo had his upper lip tie (ULT) and posterior tongue tie (PTT) released by laser. He was 8 ½ months old, and if I knew what to look for in the beginning, life with a newborn would have been sooo much better.

I won’t lie, I really disliked the newborn stage with Hugo. I actually feel guilty for saying that out loud now. Being an IVF mum you are very aware of expressing your negative feelings just in case another mum is going through infertility and would give anything for ‘said’ horrid newborn baby. But it wasn’t all fun, games and long cuddles in our house.

From week 2 through to approximately week 11, Hugo suffered from lower tummy wind. I don’t believe it was colic, as he was fine once he settled and slept well at night. But this lower wind pain was awful. After a feed had digested he would scream in pain and me being a first time mum wasn’t really sure if it was wind or if he was still hungry so I would just keep feeding him. For these first weeks I felt like he was constantly on the boob, and he would take soooo long to finish a feed! One feed would drag out to 1-½ hours, he would settle then the pain would set in so I would feed again. It was a vicious cycle of feeding, trying to help him pass the wind, burping for hours and unsettledness.

I tried every drop and remedy recommended to me and finally found what combination worked best for Hugo, see image above. I breastfed exclusively until he was 8 weeks old (through sore cracked nipples on my left side – see image above of latch, sorry about Hugo flipping the bird!) to ensure my supply had established and settled, then introduced one formula bottle before bed. I always made sure he burped several times a feed (trying every position imaginable and sometimes taking 15-20 mins to get a burp up!) and kept the drops up until he was 14 weeks old when I was sure he had grown out of it and was able to set a daily routine for him. My supply was never great, which to be honest I wasn’t prepared for. My mum had always told me she could have fed plenty of babies with the amount of milk she had produced. I was worried Hugo wasn’t getting enough as he was constantly snack feeding, however he was gaining weight like a trooper so I continued mixed feeding until Hugo was 5.5 months old. Slowly my supply was dropping until I was only feeding once during the day and through the night if he woke (which was rare). I would have loved to continue breastfeeding, but I told myself it was for the best, as I knew we were looking at starting IVF again in 2015 and needed my cycle back to normal.

I first noticed Hugo had a ULT when he was about 4 months old. Thanks to Facebook browsing I had come across a few posts and images about ties so knew what they were supposed to look like. I made an appointment with my GP to discuss the tie, however as I had no issue with latch (although I look back now and swear he did), was still successfully breastfeeding and he was gaining weight consistently, there wasn’t an issue. I was told it was more cosmetic if we wanted to pursue having it revised. Fast-forward 3 months on and noticing there was a lot more awareness of these tie issues online, I found myself feeling under Hugo’s tongue and realizing he also may have a tongue tie (thank god for the Facebook group Tongue and Lip Tie support Australia). As Hugo could poke his tongue out I hadn’t been worried about, see image below, however as he got older the restriction got worse. You can also see in the images that his upper lip is tight and constricted. ULT and PTT are closely related so if they have one, they are more likely to have both. If only I knew this 3 months ago!!

Hugo was approximately 7 months old and solids had become such a chore. I put it down to him being a fussy eater with a sensitive gag reflex. He couldn’t process the slightest of lumps properly and would gag until he vomited the food up (up to 3 times in one sitting!) Eating was not a fun experience for either of us, so I bit the bullet and booked another consult with the doctor and I requested a referral to a visiting specialist in Adelaide. It was about a month and a half wait for the appointment, so here I was with a nearly 8.5 month old still on the smoothest of purees and no chance of eating any food himself. Sometimes he would eat, others not. He was obviously put off of food due to his ‘so called’ gag reflex, and I was put off with the thought of having a fussy eater!

In the meantime, I had caught up with my sister in law and her daughter who is 8 weeks younger than Hugo. Her daughter was diagnosed with reflux at only a few weeks old and was trialed on Lactose free Formula. Reflux medication and then Soy formula. She still had issues and was still a very unsettled baby at 6.5 months old. Whilst I was bottle-feeding her on this afternoon I mentioned to my sister in law that she really shouldn’t be clicking when she sucked. This latch and suction problem would be causing wind, possibly why she is in pain and screaming a lot of the time. So I checked her mouth out and discovered she also had an ULT and her TT was a lot worse than Hugo’s.

Booked in to see the specialist together, we ventured to Adelaide on a day trip with babies and mother in law in tow. The initial consult with the specialist found Hugo diagnosed with quite a bad ULT, and also a PTT, which wasn’t as severe. His cousin was also diagnosed with both an ULT and a severe PTT and was told if she didn’t have the laser procedure she would have had a lot of trouble with developing speech. The specialist also mentioned that he believes there is no such thing as a sensitive gag reflex and it is a great indicator of an issue. He explained if you cannot lift your tongue to the roof of your mouth to create a seal, you would not be able to swallow lumps as easy. Hence the gagging. Sounds logical to me!

Two procedures, two sore little babes and a very long day in the city, we flew home dreading the next 2 weeks of tongue and lip exercises to discourage any re-attachment. In the midst of the ‘2 weeks of hell’ I seriously thought things could not get any worse. Hugo being 8.5 months old at the time of the procedure was a little older so I could see he had been slightly traumatized. He stopped eating, stopped drinking his bottle and hated the feeling of more movement in his tongue. They say it’s a bit like going to the gym for the first time and using muscles you haven’t used in a long time. The muscle recovery in the days proceeding is sore, and as he hadn’t used these muscles in his tongue or lip before, they were aching a lot. However, his younger cousin was cruising along fine still eating and drinking. Hugo had cut his first 2 teeth through these ‘2 weeks of hell’, so now that I look back I know his recovery was a lot worse than some.

I was very thorough regarding the exercises and completed them as instructed 6 times a day. This involved me swaddling Hugo and using my finger to run across the wound sites back and forth 10 times. There was no being gentle, as we did not want re-attachment and have to go through it all again! It was horrible for the poor little guy. After the 2 weeks were up I was so relieved! Hugo had improved, was eating and drinking fine again and we were back on the solids progression.

I am so glad I followed my instincts in the end, and had Hugo’s ULT and PTT revised. If I had any regrets it would be not realizing earlier, or being advised by professionals when he was a newborn that he had this issue, and having it done when he was young enough to not know what was going on. I am due with baby number two in less than 4 weeks, so now I am aware what to look for and will be on the phone quick smart to book a revision if needed. I’m hoping this time I have a better breastfeeding experience and a happier newborn.

I encourage all mothers to look in their children’s mouth to see if they have any ties. If your child is having trouble breastfeeding, its painful, they aren’t gaining sufficient weight, are refusing lumpy solids or have trouble with their speech please seek a professional opinion. These are only a few of the affects of ties, some children will only show a few symptoms, others more. They not only cause problems in infants and toddlers. If left alone severe ties can cause a lot of problems in adult life including migraines, constant shoulder, back and headaches along with speech and pronunciation problems. Ever since having Hugo revised I know quite a few local mums who have also found their children have ties. Earlier this year Australian Supermodel Nicole Trunfio had a post on Instagram highlighting her newborn and his problem with ties and breastfeeding. Awareness has increased and it is becoming a lot more common than we think.

If you suspect your child has an ULT or PTT please read the following links to other articles and blogs I found helpful. These have quite a lot of information in them, and are such good reads if you have a moment. I will keep you posted on the birth of my second child at the end of August and if he/she has an ULT and PTT. I’m hoping not, but time will surely tell!